Resources for Families
Genetic Resources
Genetic Alliance
Resources to assist individuals and their families in understanding family health history, signs/symptoms, and screening/testing options along with their implications, diagnosis, treatment, and long-term follow-up. Information about genetic research and clinical trials.
Genetic and Rare Diseases Information Center (GARD)
GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or…
The Journey Through Diagnosis: A Guide from the Midwest Genetics Network
This family-written guide for families with a genetic condition offers advice and tips from those who have gone through it themselves. Families share their experiences to help you navigate the challenges and…
MedlinePlus
Information about the signs and symptoms, genetic cause, and inheritance pattern of various genetic conditions. (English and Spanish).
National Organization for Rare Diseases (NORD)
A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment,…
National Organization for Rare Diseases (NORD) Disease Video Library
The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals and the public. NORD works with medical experts and patient organizations to develop the videos,…
Unique | Understanding Rare Chromosome and Gene Disorders
Unique provides support, information and networking to families affected by rare chromosome and gene disorders. Patient guides available in English and Spanish.
Information & Connection to Services
Children’s Resource Centers
Wisconsin has five Children’s Resource Centers for children and youth with special health care needs (CYSHCN) that are dedicated to supporting families and the providers who serve them. Children’s resource guides are available at each center to provide free and private services.
Well Badger Resource Center
A health information and referral service helps connect families and health professionals with health care services and resources throughout Wisconsin. Well Badger specializes in referrals for children and youth with special health care needs and those with developmental disabilities and delays. It provides referrals for women and children in WIC, BadgerCare Plus, and the Wisconsin Well Woman Program.
Early Childhood Services
Wisconsin Birth to 3 Program
A federally-mandated Early Intervention program (Part C of the Individuals with Disabilities Education Act – IDEA) to support families of children with developmental delays or disabilities under the age of 3.
Wisconsin Early Childhood Child Find
A continuous process of public awareness activities, screening, and evaluation designed to locate, identify, and refer as early as possible all young children with disabilities and their families who are in need of an Early Intervention Program (Part C) or Early Childhood Special Education (Part B) services of the Individuals with Disabilities Education Act (IDEA).
Parent-to-Parent Support
Family Voices of Wisconsin
Family Voices of Wisconsin helps families navigate health care, community supports and services by providing training, both in person and online, and information. The family-run organization also supports families in their own advocacy journey, promotes family-centered care, and supports family/professional partnerships. Fact sheets, newsletters and online training are available at familyvoiceswi.org.
Wisconsin Family Assistance Center for Education, Training and Support (WI FACETS)
WI FACETS provides information and training on IEPs and special education supports for children with disabilities. These services are available to parents, educators, and other professionals. Help Desk specialists also provide one-on-one phone support to parents who have questions or concerns about their child’s education.
Wisconsin Family Ties
Wisconsin Family Ties provides support, guidance, and understanding for families raising children with social, emotional, behavioral, or mental health challenges. This organization assists families as they learn to navigate the often complex world of children’s mental health. Wisconsin Family Ties help families address school issues, feel supported during difficult times, gain access to services and supports, and get their needs met.